By Melissa Deal
A few weeks ago (though it seems like a life time already) I had the opportunity to travel to New York City with some family members for a “girls’ day out.” Now for many of us in the autism community, a day away from home was a truly remarkable event itself. I, like many of you, rarely ever leave my little guy. In fact, I realized as I prepared for this trip it was the first time in the four and a half years since he’s been diagnosed that I would be leaving him overnight for something that wasn’t an autism conference or work related. But my husband was going to be taking care of him, so I felt confident in being away from him for a much needed break.
The main focus of our day trip was a visit to the Gershwin Theatre to see “Wicked.” Now for those of you not familiar with Broadway – this one is a showstopper. This musical has beautiful songs, amazing effects and the ability to help escape from one’s life – if only briefly. Ever since I first heard the “Wicked” soundtrack a year or so ago, the lyrics from one of the songs have made me think of our plight here in the “Land of Autism,” but I’ll come back to that in a moment.
The heroine of the story Elphaba, is the much maligned “Wicked Witch of the West” from the original “Wizard of Oz.” In this story, you may actually grow to love her character – I know I have. “Wicked” [Book by Winnie Holzman] tells the story of her life before Dorothy showed up. What also struck me was the character of “The Wizard” – the all-knowing, powerful Oz and how he reminds me of some doctors and officials in the CDC, especially the ones we keep seeing in the media. Never question the wizard no, never! He has a vile henchwoman named Madame Morrible, his “press secretary.” I bet some of you can think of a few women in the media we have seen touting the “it can’t possibly be vaccines” mantra that fit that bill.
What strikes me about the Wizard and Madama Morrible is that when they realize that Elphaba is willing to stand up for what she believes in and can’t be controlled, then she must be silenced and vilified. Madame Morrible announces to the citizens of Oz, “There is an enemy that must be found and captured! Believe nothing she says. She's evil” [Holzman]. Hmmm, sounds a little like what happens to people who have the audacity to question the safety and efficacy of vaccines and what they are doing to the overall health of our children.
Now, I’m a “by-the-book” kind of girl – always have been. I always follow the rules. I don’t know about you, but I spent the first year of my son’s life doing everything exactly like the pediatricians and baby books said to – all his vaccines on time, antibiotics for his ear infections. I never questioned if it was the “best” or “right” thing to do for my child. They were “Doctors” and don’t they know what is best? But all that changed when he was diagnosed with autism at 19 months. I find myself singing these lines and realizing how truly appropriate they are to my life. Because… (with apologies to Stephen Schwartz for omitting some of his amazing verses):
“Something has changed within me
Something is not the same
I'm through with playing by the rules
Of someone else's game
Too late for second-guessing
Too late to go back to sleep
It's time to trust my instincts
Close my eyes: and leap!” [Stephen Schwartz. Wicked. Decca Broadway. 2003.]
If you would have told me five years ago that I would be doing tons of internet research, calling legislators to advocate for change, e-mailing friends and family information that may one day save their child and family from a life of heartache and misery (even if some of them think I am crazy!) and helping other parents who have a child newly diagnosed on the spectrum (since I’m a “veteran”), I would have said “Oh no, that’s not me.”
“I'm through accepting limits
'Cuz someone says they're so
Some things I cannot change
But till I try, I'll never know!”
One of my favorite graphics on an AoA story was “Think for yourself – Question Authority.” So that is what I, like many of you have become; someone who reads voraciously, someone who questions and thinks for myself now, rather than just taking what the medical community and government are handing us.
“Together we're unlimited
Together we'll be the greatest team
There's ever been”
We might not succeed right away, but we MUST try. No parent should have to watch their healthy, happy baby plunge into the abyss of autism. And no individual child should be made to suffer for the greater good. Ever.
Elphaba’s anthem resonates with me and maybe it will with you, too. Just remember,
“And nobody in all of Oz,
No Wizard that there is or was
Is ever gonna bring me down!”
So keep up the good fight for your child (or grandchild) and all of the children with autism. May we soon stop adding them to the ranks by the thousands. Hopefully, a revolution will come soon, but if not we must keep working to educate those around us. We must keep trying to “Defy Gravity.”
And if you ever get the chance to go to NYC or if a touring production comes to your town, go see "Wicked." Because if you are reading this on AoA then I bet you can relate to Elphaba and you certainly deserve the “chance to fly.”
Melissa Deal is the mother of a six and a half year old son with autism. She previously worked part-time as a University instructor in Communications. She co-facilitates an autism support group in her county.